World Blood Cancer Day 2022

As today is World Blood Cancer Day I thought I should do a post about the continuing trials and tribulations of a life differently lived due to blood cancer and the effects of treatment. 

Many of you know but for new readers this story started when I was diagnosed with MDS (Myelo Dysplastic Syndrome) a rare blood cancer when I was in my early 30’s. I’d had weird blood tests back as far as my early 20’s so there had been a problem for a very long time. It took a while to diagnose me because statistically I was not in the demographic. Most people with MDS are diagnosed when they are older and it effects more men than women. Trust me to be different! 

I lived with the condition secretly for many years. My poor old long suffering partner knew but I even kept some facts away from her in the beginning in my bid to not worry people. I used to say when people asked why I looked so pale that I had a funny blood disorder and left it at that. 

As the years went by I was hit by more and more bouts of sepsis. Sepsis is a very serious condition with a 40% mortality rate. The reason I kept getting it was because my blood wasn’t producing enough white cells. This makes you prone to infection. MDS also affected my red cells and platelets. Some MDS is confined to one aspect of blood but mine was what they call multi lineage. That means I would bruise easily at times and also become seriously anaemic and need blood transfusions. Each time I got sepsis, I would fight my way back and after recovering I would get back to full time work. The dips and hospital admissions were getting more frequent and I was beginning to struggle. For my 50th birthday I wanted to go on holiday with my extended family. 13 of us went to Majorca for a couple of weeks of chillin’ in the sun. We had a super time including a brilliant day out in a speed boat. The day before we were due to fly back, I was taken seriously ill. I’d been sick in the night and I had a temperature in the morning and was a bit confused. My partner marched me straight down to the doctors. Thank heavens she did. The doctor didn’t speak English. I don’t speak Spanish. He took my temperature which was really high. Then he took my blood pressure, pulse and oxygen levels. All were in my boots. He looked at me, then looked at his readings and he banged the machine and did it again. Same thing happened. He was in disbelief that I was still upright. The next thing I knew I was put on a bed and I was surrounded by medics and had needles put in my neck and my clothes cut off. I had developed sepsis again but this time it had developed into septic shock and that has a 60% mortality rate. I was placed in ICU and my poor family were told I was going into organ failure and I may not survive. 

I can’t image how hard it was for my daughter and sisters and extended family to fly home not knowing if they would see me again. Our travel insurance enabled my partner to stay on with me. The Spanish system was excellent and they certainly saved my life. I got out of hospital after 11 days and then had the best part of another week before I was well enough to fly. 

It seems I have more lives than a cat but my medical team were worried that one day I wouldn’t bounce back. They prepared me for a bone marrow transplant which happened in October 2016. They started to search the bone marrow registers but no one was a good match for me. They said they would test my younger sister as she was the only full sibling I had. They warned us both that there was only a 25% chance of a match with any sibling. Fortunately, Gail was that match! 

The transplant was a gruelling process but I embraced it warts and all as I hoped it would put me into remission and give me longer on this earth. It has certainly done that because 5 years later I’m still breathing. 

Sadly though I live with the consequences of such harsh chemotherapy. I also have muscle myopathy (weak muscles) probably from all the steroids I’ve had to take. I have still got a wonky immune system that is not strong at all. I am treated with IVIG to give me some antibodies but I can easily pick up infections. If I do get an infection it seems to have a dramatic effect on my weak bone marrow and it goes into free fall and all my counts bottom out. My fantastic medical team at Kings keep a good eye on me and if they spot that process happening they admit me and fill me up with strong antibiotics. As I am fragile in that way covid has been a nightmare. I’m still having to shield. I haven’t hugged my daughter, grandkids, sisters, brother, extended family and friends since this horror started. I’m very tactile and I miss that contact. However I am blessed to have a garden that I make really good use of during the warmer months and entertain people. 

Some of the side effects of all that treatment have been serious damage to my hearing, lung damage which leaves me breathless on exertion, muscle wasting, skin itching, cataracts, dry mouth and eyes, gut and absorption problems, gastroparesis and reflux and dental issues. I had a condition called SVCO which has left a few issues and I had a small stroke last year. I have also developed osteoporosis. 

Despite all that I count myself lucky. I’ve seen my daughter grow into a beautiful young woman and a fantastic mother. I’ve seen my 4 grandchildren born and grow. I’ve proudly watch my niece finish her degree and start to make her way in the world. I’ve celebrated more than 30 years of love with my amazing soul mate and partner. I’ve presided over my sister and mothers funerals as well as many other family members and friends. I’ve welcome new life to the world and given thanks in baptism for them and I’ve married people and celebrated love. 

If you are newly diagnosed, do not despair. I was diagnosed in 2000 and I’m still going. 

One of the things that ill health has taught me is to live deep within my soul. I don’t sweat the small stuff or the big stuff. I know I’m blessed to live in the time I do where all these treatments are available to me. I’m blessed to have such a supportive family and friends. I’ve also got to know many virtual friends all over the world that I wouldn’t have known otherwise. 

Living with blood cancer is not easy  but it doesn’t have to be the end , it just means letting go of the life you thought you’d have to then live the life you do. It’s ok to struggle. These things are not easy but the struggling helps you to be the best version of you that you can be. 

On this World Blood Cancer Day I wish you every blessing for all your experiencing and going through. Just hang on in there, some of the best days of your life hasn’t happened yet. 

Garden Blessings

 

Sometimes I just don’t know where to start. I’m in the midst of one of those times where I just have to keep breathing. 

Today is a big Kings Hospital day. I left home shortly after 8am. I was due to have IVIG at 9.30, then a skin biopsy at 12, then haematology clinic at 1.30 and finally rheumatology at 3.20pm. It will be a minor miracle if all that happens without any hiccups. 

Tomorrow I’m back at Kings to be admitted for a small op to tighten up the muscle between my oesophagus and stomach. What a life eh? 

I’ve been feeling really tired for the last few days. Let’s hope the good sleep with the general anaesthetic perks me up. I can live in hope. Lol. 

One of the good things thats been going on recently is being able to get back out in the garden. It’s been so nice to hang out with family, friends and neighbours and share some good wine and food as well as great conversations. My poor mate Alison came from Cumbria for a visit. Sadly it was bloody freezing that day. We wrapped ourselves up in blankets and enjoyed the conversation. I hope we have a warm and dry summer so that we don’t have to freeze when catching up with people. 

One of the really good things that’s happening for me just now is I’m almost there in getting my bike back on the road again. I haven’t ridden “Theo” for just over 7 years. Being a motorcyclist is part of my DNA. I’ve had bikes since I was 17. It gives me such a sense of freedom. I feel like I’m at one with the bike as I glide through the air. Many of you know I suffer with terrible nausea and vomiting. When I’m on the bike that goes away as I feel the air whistling around me. It’s so refreshing and invigorating. I’m very happy about that but I know my poor long suffering partner isn’t that impressed. What I always say to people is that it’s really important to live until you die. Being wrapped up in cotton wool is like a slow death to someone with an adventurous spirit. Watch this space as I get back on two wheels and have a new set of adventures to blog about. 

Last week I found out that a lovely man who had been very important to me as a teenager died. David was the priest when I showed up as a street urchin come new chorister. The choir trainer at the time was called Gerald Gostling. He used to keep me behind after choir practice to sort out my diphthongs. Lol. For those who don’t know what they are it’s the point in the word where the vowel sound changes. If you have a South London accent like me you change the diphthong early. When singing it’s important to change it late. He also made me practice my vowels so I wouldn’t stick out. I remember all that so fondly. I still have my London accent but you won’t hear it when I sing. 

Any way getting back to David. He was a fairly traditional priest. He had a big pastoral heart and helped a lot of people. I was encouraged to speak to him about my unhappy home life. I felt he listened and understood me. Even when I ran away several times and he was left with the task of taking me home, he never berated me. He made me feel that I had some genuine grievances and he didn’t judge me. He was the first person to stand up to my dad for me and I loved him for it. When he hugged me I felt safe and loved. 

Despite all that love and good church based influence, I was still a mischievous imp. David and his wife Mary had 3 children Peter and Stephen who were twins and Carol. When we were younger teenagers we were all really close. At 17 Peter and Stephen went in separate directions. Peter Became a Verger at Norwich Cathedral and Stephen joined the army. There was one occasion when David was away on retreat. Stephen and I “borrowed” his car and drove to Norwich to see Peter. I did some of the driving despite not having a license. It was great fun and we never got caught. Funnily enough I think the car was a green hill man imp. Lol. Those were the days eh. 

Sadly Stephen died in an accident about 10 years ago. My heart goes out to Peter, Debbie and Carol and their families as well as Honor at this sad time over the loss of David. 

It’s taken me a couple of days to write this as I’ve been so busy with hospital appointments. On top of what I mentioned above over the last 2 days as well as seeing the 4 consultants in their different specialisms, I’ve also had a skin biopsy which left me with 2 stitches, a photo session with a medical photographer and an X-ray of my neck. The next day I had the ARMS procedure (anti reflux mucosectomy)  under general anaesthetic. The anaesthetist was lovely and had read up about me waking up under anaesthetic before. She said I would be fine and she would look after me. I warned her I had problem veins and it took 3 attempts to cannulate me the day before. She said she was confident and was only using a small one. I didn’t like to say they even have trouble trying with paediatric ones with me. The first try didn’t work then bled everywhere when she took it out. Typical. She got in on the second go though. She gave me a strong painkiller and said I should begin to feel woozy. It was nice. For the first time in ages my neck didn’t hurt. Then she slowly put in the anaesthetic. She was talking to me and said to go to my happy place. I told her I felt drunk. She said that’s nice, I said yes and very unusual, then I don’t remember any more. It was lovely. 

When I woke up I had a bit of a sore throat and a slight chesty cough that hurt  my chest when I coughed. My stomach felt like it had been messed with but it wasn’t too sore. They had booked me a bed for the night as I’m a complicated patient but I’m also very tolerant of all these medical interventions and I cope well. I asked if I could go home and they were happy to let me. I just need  to stick to a soft diet for a few days. 

Since I’ve been home I’ve taken it a bit easy as my tummy feels a little delicate. I went to vote on my mobility scooter and went to the wrong polling station. It’s all changed with the new ward boundaries. Never mind. Serves me right for not reading my info properly. 

Today I had a lovely time in the garden. First I had a leisurely lunch with my daughter. I’m so proud of her and the mother she has become. I miss hugging her enoumouswith 3 of my neighbours. Over a few glasses of wine (them no me) Lol we put the world to rights. It was a lovely sharing of the lives of 5 women. All of us come from differing backgrounds but shared the common human experiences of life. We drank from the well of lives deeply lived and experiences had. It’s such a shame that people don’t gather regularly to just chat. We all learnt from each other and I’m sure we each took things away from the richness of the conversations. 

One of the good things about the pandemic is that it has built community in places. In the last weeks I’ve had lemon drizzle cake from two different neighbours as well as rock cakes and rhubarb crumble. When my partner makes nice bread or rice pudding we share that with people. All these little things add up and really help in getting through this tough time of continued shielding. Of course I long for the day when I can be free again but I also count my blessings to have so many great family, friends, neighbours and NHS staff in my corner. 

Wherever you are in the world reading this blog I hope you also have some good people in your corner too. If not go and find some. I promise they do exist and the more light you let into your life the brighter your world will become. 

International Women’s Day

Today is #internationalwomensday so I thought it was a good day to post. It’s also been a year since I had what up till last week was described as a TIA or trans ischaemic attack (mini stroke). I remember the day so vividly. We had a couple of workmen in who were installing a new boiler. I had a mask on as did everyone else in order to protect my immunity. My partner came in the room and asked me something. I tried to answer her and was looking straight at her but no words came out. She turned on her heels and went off thinking that I was distracted or something. Then I started getting this tingling feeling in my arm and leg. I say down and pulled my masks down as I knew something was wrong. My partner came back and spoke to me again. I was trying to write her a note on my mobile but I couldn’t work out how to even open it yet alone write a message. It was weird. She said you can’t talk can you? I was able to shake my head. She said “we’re going straight to the hospital” And we just put our coats on and left. The workman were left wondering what on earth was happening. 

Now we wind on a year. This week I finally had my appointment with gastroenterology. This was the first one since October when they took the PEG out and did various biopsies. The lovely consultant was apologetic about all the mistakes that had happened previously. He explained that the muscle in the top of my stomach was too lax and needs tightening. He said that can be done endoscopically and after 3 months they would check again if it’s worked ok. Then he said the muscle in the bottom of my stomach was stiff and not always letting food through. This is a slightly more complicated procedure but still should only involve an over night stay. The biopsies were all fine. 

It was good to have this info and to know there was a plan to hopefully improve things. 

I was feeling rough that day as originally I had been told my appointment was at 12pm. I then got a text telling me it was at 10am instead. I find getting up early and taking all those horrible tablets really quite challenging. It leaves me feeling very delicate. When I was phoned and asked if I could attend an MRI on the same day I said yes as it’s always good to have two appointments on the same day as it cuts down on the travelling. The scan was booked in for 2pm. 

So after I finished with the gastro appointment at 10 instead of just sitting around and waiting till 2pm, I went and knocked on the door of the MRI suite and asked if they could see me earlier. They were lovely and fitted me in straight away. 

I was home by 12.30pm so it all turned out ok in the end. Sadly though I still felt pretty grim. The effects of getting up so early were still hanging over me.   

On that day I also had a phone call appointment with the stroke/Tia doctor. He was checking if I had any lasting effects from what occurred a year ago. I said that sometimes I forget what I’m saying and I still reach to find words at times. This is unusual for me who is so used to expressing myself and writing things. I also said I still get numbness and tingling in my arms and legs but that could be nerve compression.  I explained that I’d had an MRI that morning and was he able to see the results. He asked me to wait why he looked into the computer. He then told me the MRI was available but hadn’t been reported on yet. Then came the bit that I really didn’t see coming. He told me the MRI showed that in fact I’d had a small stroke last year not a TIA as first thought. I was a bit gobsmacked. He said the treatment was still the same and he was happy to discharge me from that clinic. I was happy to be discharged but did feel a bit overwhelmed by the news. My life continues to be unpredictable and challenging. 

Later that day after unsuccessfully trying to war some supper I ended up doing some of my huge vomits. This went on for 24hrs and left me feeling completely washed out. I gradually started eating and drinking again. Then blow me down if it didn’t happen again yesterday. I’ve not eaten and I’m feeling quite weak and wobbly. 

I know there are several thing against me that contribute to the nausea and vomiting. Alongside the weak muscles and gastroparesis there is also all the medications I take as well as bits of GVHD. Sometimes I would just like a simple life. I long not to feel nauseous and to be able to enjoy food. It just doesn’t happen. 

I sent an email to my haematology consultant. I said I wondered if the antifungal and antibiotics I was currently on for my chest infection. They are stronger than the normal stuff so that’s what makes you feel ropey. She has suggested I stop taking one lot and see if things improve if not reintroduce them and stop the other one. This is alongside me already increasing my anti sickness drugs. 

I often say to people I don’t mind being this sick but I really hate feeling unwell. What I mean by that is I know I am limited in what I can do. I can’t breathe very well. I can’t walk without pain. I have no energy etc but the throwing up and constant nausea is awful. That’s the bit that gets me. 

As well as all these challenging things there have been some lovely events going on. My beautiful granddaughter was finally brave enough to do a backwards flip. I’ve been encouraging her and she sent me a video of her doing it. I was so proud of her and loved to see the delight in her eyes. I had a lovely “walk” in the park with some of my sisters and brother. I caught up with my lovely cousins and celebrated their amazing daughters 18th birthday. It’s always important I think to try and see the light as well as walk unafraid in the darkness. 

In my life I have met many amazing women. They have all helped me in different ways to be the strong woman I am today. Among the women that influenced me life are:

My nana

Cagney and Lacey 

Mrs Wilson my French teacher

Ros

Wendy

Commander Kira

Frances

Captain Janeway

Marlene 

Charlie’s Angels

Mo Molem

Greta Thunberg

Maya Angelou

Germaine Greer

Uhura

Jane Hobday who taught me about prejudice

Diana

Demi Moore

Mala Yousef

Suffragettes 

Mary Magdalene

Princess Leah

Then of course I have the wonderful women in my family:

Maggie 

Annie

Molly

Gail 

Jess

Dawn 

Karen

Helen

Sandra 

Sarah

Charms

Abbie 

Sallie

Linda

Caity

Gill

Hannah

Anne-Marie

Mya

And supporting the women some fairly good blokes

Jeff

Will 

Russell

Terry 

John

Nick

Josh

I also can’t let this moment go without paying tribute to the amazing women medics who have kept me going over the years:

Sophie

Geke

Janet

Ashleigh 

Leonie

Kavita

Katie

Victoria

Carmel

Shu

Pramila 

Anna

Ciane

On this special #IWD22 let’s give thanks for all the women who have and who do make us the women we are. Thank you for your love, encouragement and support. I shall finish with some strong womens quotes:

“I raise up my voice – not so I can shout but so that those without a voice can be heard… We cannot succeed when half of us are held back” Malala

“Well-behaved women rarely make history” – Eleanor Roosevelt

“Feminism isn't about making women strong. Women are already strong. It's about changing the way the world perceives that strength.”

G.D. ANDERSON

Rare Diseases Day 22

 

Today is Rare Diseases Day and as my original diagnosis was a rare blood cancer, I thought it would be a good day to write a new blog. 

I’m my last update I explained that I’d been an inpatient and they were treating me for pneumonia. It seems I have a fungal lung infection that then caused a bacterial infection. I was put on some strong antibiotics as well as a hefty dose of antifungals. 

I got out of the hospital Sunday night which gave me a day to prepare for my friends funeral that I was taking. I felt pretty awful. I’m normally very quick in writing liturgies and personal eulogies. I’m lucky that I have this ability to sit and let it all come out in one stream. What I found was that I kept losing my concentration. The words would also start to swim in front of me on the screen. It was a strange experience. I kept at it but it took me twice as long. The other thing I noticed was I was shaking. My hands had an obvious tremor. Also my legs were uncoordinated. If I had to step over something, I’d really wobble. On top of this when I was in the car, I’d look up and not recognise where I was despite it being a familiar road. In what is highly unusual for me, I asked my other half to drive. This went on for a few days. I felt like I was dying. I was uncoordinated and clumsy. I couldn’t concentrate and I was very shaky. 

Despite all of this I was determined to take Eileen’s funeral. It was at a nice time later in the afternoon so I didn’t have to get it together too early. My lovely Maggie drove me to the crematorium and went for a wander in the grounds while I took the service. When I write these liturgies I always print them in large font. This makes it easier to look up and connect with the people at the service and navigate your way back to where you’ve left off.  This was working fine until we came to the hymn. The family were keen to have a hymn because their mum loved music and singing and used to be on the rota to play the recorded accompaniment during our church devices. I told them all they needed to sing. The only problem was the backing track was a choral version that was set too high for congregational singing. Normally I would belt it out and try to encourage others to join in. Sadly though my lungs were not up to singing. The effort it took started making me shake from head to foot. The small print of the hymn words meant the words were swimming before my eyes and I couldn’t find my place. I had to grab the chair beside me at one point and I also gave up on attempting to sing. 

It’s never happened to me before.  I felt vulnerable in that moment and just decided to concentrate on my breathing. Fortunately I was able to dig deep into my soul and find the resilience and resourcefulness I needed to get through the rest of the service. I was so pleased to have pulled it off without incident or anyone noticing. I hope I did Eileen proud. May she rest in peace. 

The next day I took it really easy and recharged the batteries. Then I had to go for a check up to the hospital. I explained how I was feeling and that I don’t remember ever feeling so frail and vulnerable. Normally I sleep like a log for 10-11 hours a night. I hadn’t slept for 3 nights more than a brief doze and this was also making me feel very spaced out. I told the doctor and it seems that the strong antibiotics were the culprits. Also the antifungals were causing problems so they changed both of them and I slowly started feeling normal again.  It’s not until you’re really sick that you realise the huge impact that some of these life saving drugs have on the rest of your body. 

The current additional meds will need to be taken for around 3 months. Healthy adults do not get fungal lung infections. It’s something that only happens to immunocompromised people like me. Fingers crossed there’s not too much lung damage. 

I’m feeling slightly sad just now at the impact all of this has had on my voice. I had to give up so much over the years. Football was a hard one to let go of. Hill walking and circuit training and bike riding all have gone by the wayside. What I’ve held onto was my singing. The last couple of years with covid put pay to communal singing for me. The hard thing for me now is that I just don’t have enough puff. I’ve been struggling to get to the end of the line of music before taking a breath for a while. If you sing with others you can hide that you a breathing in the wrong places. These days though I can’t push enough air out of my lungs with my diaphragm to make a good quality sound. Music is the language of the emotions and it’s speaks for us when we can’t out into words how we feel. It’s also good for you mentally and physically. I really miss it and don’t feel I’m ever going to get back to be able to sing in cathedrals when my old choir covers the cathedral choirs for absence. 

On this rare diseases day I wanted to share with you how debilitating it is to have a rare blood cancer. Then after transplant to have rare side effects like losing my hearing and the ongoing battle with GvHD (graft verses host disease) and now lung damage due to a fungal infection. All these things are rare and people like me are beginning this journey every year. The big cancers of breast, lung, bowel and prostate take the lion share of cancer funding. The rest of us have to fight our corners to shine a light on to the issues. Please help us share our stories of living with rare diseases so that funding is given equally and also so that people begin to recognise the early symptoms of blood cancer. In case you don’t know what they are its:

fatigue

breathlessness

bruising 

night sweats 

prone to infections 

If you are experiencing any of the above, please see your doctor and ask for a blood test. This will be enough to show if there’s a problem that needs further investigation. 

Thank you to everyone who has helped me with living with my rare blood cancer. My family and friends  are an amazing bunch. I’ve also met many dedicated medics. I’m really proud to be part of MDS UK which does so much to demystify this appalling illness and bring comfort and support to so many. On this Rare Diseases Say 2022 I dedicate this blog to Sophie and all the staff and volunteers at MDS UK. You will never know the difference you make to so many. Keep going all of you, we need you and the world needs more people like you too.